In the first four weeks of Jessica's life a number of problems arose. All three were stressful and impacted on our family. Number one and two problems were Jessica's brother and sister. These went hand-in-hand with problem number three which was Jessica's inability to feed due to severe sleepiness. Our household was not a happy one to begin with until these three issues were brought under control.
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Problem Number One - Three year old Nicholas |
Nicholas was severely put out by the birth of Jessica. Being the youngest and the only one at home he was used to having a lot of individual and undivided attention. Well this was smashed with the arrival of Jessica. It took a couple of weeks for him to settle down and realise that she wasn't going anywhere and that he was still loved. After he settled down he showered Jessica with love.
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Problem Number Two - Six year old Melissa |
Melissa went to school on the day of the birth. The principal came and told her when Jessica arrived. We had told Melissa Jessica's name the night before so she knew before the school did. Melissa was fine at school and all excited about going to the hospital to see her baby sister. After seeing Jessica she changed. Melissa became lost. She didn't know what her role was anymore in the family and she didn't acknowledge Jessica's existence for 4 weeks.
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Problem Number Three - Jessica would not wake up to feed |
The day we brought Jessica home marked the beginning of a very stressful few weeks on top of her siblings' behaviour (though it must be said that the Jessica stress did impact on the other two). We arrived home around lunchtime on Day 5 (Sunday). We unpacked and I fed her. The rest of the day went well. That night Jessica had a bath and her bedtime routine - no problems. I went to bed and woke up horrified the next morning - it was 5:30 pm and Jess had missed two feeds. It took a couple more hours before I could wake her enough to breastfeed her (10 hours in total). The hospital rang around lunchtime and I explained the problem - they said wake her (which I had been trying to do - every trick in the book - undress her, wet her, wriggle her etc - nothing was working). They said they would let the pediatrician know. Monday night proved the same. Tuesday I was extremely worried and stressed. I contacted the pediatrician. She said to bottle feed her and set the alarm for during the night, and let her know if things maintained the way they were. Tuesday afternoon was better using the bottle and she fed during the night. Wednesday morning she refused to bottle feed - we panicked. We took her back to the hospital for advice. The pediatrician was on holidays but the hospital contacted her. She told the midwife to show us how to force feed her with the bottle and we were sent home (Jessica lost a pound in this time). We thought this was all due to her jaundice and that they would have investigated her levels, but they didn't. We went home frustrated and made the decision that if things didn't improve we would take her to another hospital for advice. The force feeding worked thank goodness. I would express and Jessica would have the milk in the bottle.
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Seeing the Geneticist and the Diagnosis |
At four weeks we took Jessica to see the geneticist. She took Jessica and did some floppiness tests on her and sat down to have a chat with us. I wondered what she was doing as we were there to get the paperwork for the Crouzon Syndrome DNA test.
She asked me what I thought Jessica had and she asked my husband as well. I said that I thought she had a mild case of Crouzons based on her 'sandal toes'. The geneticist told us that she wanted to do a chromosomal test as well as the Crouzon test. I had no clue why. Then she said that she was fairly certain that Jessica had Down Syndrome.
This hit like a bomb inside my head. Down Syndrome. That sinister thought I had had when I saw her at her birth came back to me rapidly. There it was raising it's ugly head again!
Low and behold my husband told the geneticist that he had had the thought as well - we both had, but had not be brave enough to tell each other.
Well here it was - we had to deal with it now. Jessica went and had the blood test and we went home in shock.
Once we got home we cried and rang family and close friends to share the news. Our friends came over and everyone was in denial.
The next day the phone rang. I was too nervous to get it, so my husband did. He started to cry so I knew what the results were. My prayers that Jessica did not have the syndrome were not answered. The next wait was to find out whether she also had Crouzons along with it.
I stunned myself with my reaction that night to the news. I thought I would have accepted the news as I have accepted so many other things in my life. But I didn't. I didn't want a child with Downs. I had told God that if I had to have a child with Crouzons or Downs, give me Crouzons, as I didn't ever want to have a child with Downs. I didn't think I could cope with that. And low and behold, what did God give me? A child with Downs. I was angry - really angry! I was angry with God and I wanted to give Jessica back - I didn't want her - I wanted the child with Crouzons instead. I actually rejected her for a few hours and wouldn't go near her.
Thank goodness this next morning I got my act together and fell back in love with my beautiful baby daughter again. I am thankful for not having been told the news for 4 weeks as I had really bonded with my baby girl by then and I knew how much I loved her. That love came back to the surface the next morning.
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Milestones |
At 4 weeks Jessica raised her head when lying on her tummy.